How My Mind Came Back to Life — and No One Knew | Martin Pistorius | TED Talks

譯者: Harry Chen 審譯者: Hayley Kang

Imagine being unable to say, "I am hungry," "I am in pain,"

想像一下無法表達「我餓了」、 「我很不舒服」、

"thank you," or "I love you."

「謝謝」或者「我愛妳」，

Being trapped inside your body,

被困在無法執行大腦指令的軀殼裡

a body that doesn't respond to commands.

被困在無法執行大腦指令的軀殼裡

Surrounded by people,

被人群包圍

yet utterly alone.

卻極度地孤寂。

Wishing you could reach out,

一心指望自己能與外界接觸、

to connect, to comfort, to participate.

和人有連結、給人慰藉、一同參與，

For 13 long years, that was my reality.

那是我長達 13 年的遭遇。

Most of us never think twice about talking, about communicating.

大多數人都把表達與溝通視為理所當然，

I've thought a lot about it.

我卻已經想過不知幾回了，

I've had a lot of time to think.

我有很長的時間可以思考。

For the first 12 years of my life,

在我生命的頭 12 年裡

I was a normal, happy, healthy little boy.

我是個平凡、快樂、健康的小男孩，

Then everything changed.

後來所有事情都改變了 ，

I contracted a brain infection.

我的大腦受了感染，

The doctors weren't sure what it was,

醫生們不確定那是什麼東西，

but they treated me the best they could.

不過他們竭盡所能治療我。

However, I progressively got worse.

然而我的狀況日漸惡化，

Eventually, I lost my ability to control my movements,

最後，我失去行為能力，

make eye contact,

眼神交集，和說話

and finally, my ability to speak.

的能力。

While in hospital,

在醫院時，

I desperately wanted to go home.

我極度渴望回家。

I said to my mother, "When home?"

我跟母親說：「何時、家？」，

Those were the last words I ever spoke with my own voice.

這是我迄今以我自己的聲音 最後說出的詞彙，

I would eventually fail every test for mental awareness.

我通過不了 所有對心智感知的測試。

My parents were told I was as good as not there.

他們告訴我的父母， 我就像不存在一樣，

A vegetable, having the intelligence of a three-month-old baby.

一個有著三個月大嬰兒智力的植物人，

They were told to take me home and try to keep me comfortable

他們請我的父母帶我回家，

until I died.

儘量保持我舒適，直到死亡。

My parents, in fact my entire family's lives,

我的父母，我的家庭生活，

became consumed by taking care of me the best they knew how.

都被他們如何能更好地照顧我這件事影響。

Their friends drifted away.

他們的朋友逐漸疏遠他們。

One year turned to two,

一年變成兩年，

two turned to three.

兩年變成三年。

It seemed like the person I once was began to disappear.

就像曾經的我逐漸消失；

The Lego blocks and electronic circuits I'd loved as a boy were put away.

我喜愛的樂高積木和電子迴路被拿走，

I had been moved out of my bedroom into another more practical one.

我從原本的臥房 搬到一個對我來說更實際的房間，

I had become a ghost,

我成了一個鬼魂，

a faded memory of a boy people once knew and loved.

一個人們曾經認識、喜愛的孩子的影子。

Meanwhile, my mind began knitting itself back together.

同時，我的神智正開始自我縫合，

Gradually, my awareness started to return.

我的認知逐漸恢復，

But no one realized that I had come back to life.

但是沒有人知道我已經回魂。

I was aware of everything,

我意識到每一件事，

just like any normal person.

像正常人一樣，

I could see and understand everything,

我看見及懂得每一件事，

but I couldn't find a way to let anybody know.

但是我無法讓別人知道。

My personality was entombed within a seemingly silent body,

我的人格被埋藏在看似沉默的軀殼裡，

a vibrant mind hidden in plain sight within a chrysalis.

活力充沛的思考虛掩在蛹繭裡。

The stark reality hit me that I was going to spend

我終於意識到，

the rest of my life locked inside myself,

我將會困鎖在自己的軀殼裡度過餘生，

totally alone.

全然孤獨。

I was trapped with only my thoughts for company.

只有我的想法陪伴我，

I would never be rescued.

我將永遠無法獲救，

No one would ever show me tenderness.

沒有人會再對我顯現溫柔。

I would never talk to a friend.

我將永遠不能跟朋友說話。

No one would ever love me.

沒有人會愛我。

I had no dreams, no hope, nothing to look forward to.

我沒有夢想、希望、期許的東西，

Well, nothing pleasant.

沒有任何喜樂。

I lived in fear,

我活在恐懼裡，

and, to put it bluntly,

簡單來說，

was waiting for death to finally release me,

等著死亡來釋放我，

expecting to die all alone in a care home.

等著全然孤寂的死於安養所。

I don't know if it's truly possible to express in words

我不知道是否真的有可能

what it's like not to be able to communicate.

把無力溝通的經歷化為文字，

Your personality appears to vanish into a heavy fog

那就像你的人格消失在大霧中，

and all of your emotions and desires are constricted, stifled and muted within you.

你所有的情緒和欲望， 都被限制、窒息、閉鎖在內心。

For me, the worst was the feeling of utter powerlessness.

我認為，最糟的是無力可施的感受，

I simply existed.

僅僅只是苟活在世。

It's a very dark place to find yourself

這是一種很黑暗的感受，

because in a sense, you have vanished.

某個程度上說，你已經消失了。

Other people controlled every aspect of my life.

其他人掌握著我各方面的生活 －

They decided what I ate and when.

他們決定我何時吃以及吃些什麼，

Whether I was laid on my side or strapped into my wheelchair.

我該側躺還是綁在輪椅裡。

I often spent my days positioned in front of the TV

我經常被擺置在電視前

watching Barney reruns.

看「小博士邦尼」的重播。

I think because Barney is so happy and jolly,

而「小博士邦尼」是如此快樂愉悅，

and I absolutely wasn't,

就像在諷刺我，

it made it so much worse.

簡直是雪上加霜。

I was completely powerless to change anything in my life

我全然無力改變生活裡的任何事，

or people's perceptions of me.

或是旁人對我的認知。

I was a silent, invisible observer of how people behaved

我是人們以為沒人看到的時候，

when they thought no one was watching.

那個沈默，隱形的觀察者。

Unfortunately, I wasn't only an observer.

不幸地，我不只是個觀察者。

With no way to communicate, I became the perfect victim:

無法表達讓我成了最好下手的目標，

a defenseless object, seemingly devoid of feelings

一個無法自保的受害者，看似缺乏知覺，

that people used to play out their darkest desires.

用來宣洩人們最陰暗的慾望。

For more than 10 years, people who were charged with my care

長達十年以上的時光， 負責照料我的人

abused me physically, verbally and sexually.

傷害我的身體，責罵、性侵，

Despite what they thought, I did feel.

或許他們不知道，但我是有知覺的。

The first time it happened,

這些事第一次發生時

I was shocked and filled with disbelief.

我既吃驚且不可置信，

How could they do this to me?

他們怎麼能夠對我做這些事呢？

I was confused.

我感到困惑，

What had I done to deserve this?

我造了什麼孽而活該如此？

Part of me wanted to cry and another part wanted to fight.

我一方面很想哭出來， 另一方面又想要挺身而戰，

Hurt, sadness and anger flooded through me.

疼痛、悲傷和憤怒淹沒了我。

I felt worthless.

我感到卑賤，

There was no one to comfort me.

沒有人來慰藉我，

But neither of my parents knew this was happening.

我的雙親並不知道這些事，

I lived in terror, knowing it would happen again and again.

我活在恐懼裡， 知道它會一而再、再而三的發生，

I just never knew when.

我只是永遠不知道是什麼時候，

All I knew was that I would never be the same.

我知道的一切就是 我將永遠不再是原樣了。

I remember once listening to Whitney Houston singing,

我記得曾經聽過惠妮．休士頓唱道：

"No matter what they take from me, they can't take away my dignity."

「不論他們從我這帶走什麼， 他們無法帶走我的尊嚴」，

And I thought to myself, "You want to bet?"

我想：「妳要賭一下嗎?」。

Perhaps my parents could have found out and could have helped.

或許我的雙親能夠發現、可以幫上忙，

But the years of constant caretaking,

不過長年下不間斷的照護

having to wake up every two hours to turn me,

每兩個鐘頭起床一次幫我翻身，

combined with them essentially grieving the loss of their son,

加上失去兒子的痛苦，

had taken a toll on my mother and father.

對我父母造成無可挽回的傷害。

Following yet another heated argument between my parents,

在某個激烈的爭吵中，

in a moment of despair and desperation,

一個絕望和衝動的時刻，

my mother turned to me and told me that I should die.

我母親轉向我，告訴我我該死，

I was shocked, but as I thought about what she had said,

我很吃驚。但是當我認真思考她的話，

I was filled with enormous compassion and love for my mother,

我對我母親充滿了無盡的憐憫和愛意，

yet I could do nothing about it.

然而我卻無能為力。

There were many moments when I gave up,

許多次我放棄了自己，

sinking into a dark abyss.

陷入黑暗的深淵。

I remember one particularly low moment.

我記得一個特別低潮的時候，

My dad left me alone in the car

當我父親衝進商店買個東西，

while he quickly went to buy something from the store.

把我單獨留在車內，

A random stranger walked past,

一個奇怪的陌生人路過

looked at me and he smiled.

看著我，然後微笑，

I may never know why, but that simple act,

我也許永遠不知道為什麼， 不過這個簡單的動作，

the fleeting moment of human connection,

這一閃即逝的交流，

transformed how I was feeling,

改變了我當時的感受，

making me want to keep going.

讓我想堅持下去。

My existence was tortured by monotony,

我的生活被百無新意所荼害，

a reality that was often too much to bear.

一個不可承受之重的現實。

Alone with my thoughts, I constructed intricate fantasies

在我的思緒中， 我架構出錯綜複雜的幻想，

about ants running across the floor.

像是螞蟻橫越地板。

I taught myself to tell the time by noticing where the shadows were.

我教我自己透過 注意陰影的位置來分辨時間，

As I learned how the shadows moved as the hours of the day passed,

當我學會當時間一小時一小時經過 影子如何移動時，

I understood how long it would be before I was picked up and taken home.

我搞懂了在我被人接走 還有帶回家前還有多長的時間，

Seeing my father walk through the door to collect me

看著我的父親走進門來接我

was the best moment of the day.

是每天最棒的時刻。

My mind became a tool that I could use

我的心思變成一個工具，

to either close down to retreat from my reality

我可以封閉自己，逃避現實，

or enlarge into a gigantic space that I could fill with fantasies.

也可以放大到 填塞我幻想之寬闊浩大的天地。

I hoped that my reality would change

我希望我的現實將會改變，

and someone would see that I had come back to life.

會有人知道我已經恢復神智了，

But I had been washed away like a sand castle

但是我就像個蓋得太靠近浪邊的沙堡，

built too close to the waves,

輕易地被沖走，

and in my place was the person people expected me to be.

而在我原來的位置上， 是人們對我的想像。

To some I was Martin, a vacant shell, the vegetable,

對有些人而言我是馬丁， 一個空蕩蕩的外殼、植物人、

deserving of harsh words, dismissal and even abuse.

本該受冷言酸語、漠視、甚至是虐待。

To others, I was the tragically brain-damaged boy

對其他人而言， 我是兒時損傷了大腦，

who had grown to become a man.

悲慘地成長為男人的男孩。

Someone they were kind to and cared for.

他們所善待以及照顧的某人。

Good or bad, I was a blank canvas

無論好壞，

onto which different versions of myself were projected.

我是一片上頭投射了 不同版本的空白畫布。

It took someone new to see me in a different way.

需要新的眼光，才能看到不同的我。

An aromatherapist began coming to the care home about once a week.

一位香薰治療師， 開始一週一次來到安養所，

Whether through intuition or her attention to details

不論是透過直覺，

that others failed to notice,

或是對他人忽略細節的觀察入微，

she became convinced that I could understand what was being said.

她開始認為我能理解別人的話。

She urged my parents to have me tested by experts

她鼓勵我的雙親讓我接受專家測試，

in augmentative and alternative communication.

以擴大與替代性的溝通方法。

And within a year,

不到一年，

I was beginning to use a computer program to communicate.

我開始用電腦程式做溝通，

It was exhilarating, but frustrating at times.

多麼令人亢奮， 雖然有時也很惱人。

I had so many words in my mind,

我的腦海裡有這麼多文字，

that I couldn't wait to be able to share them.

我等不及有一天能分享它們；

Sometimes, I would say things to myself simply because I could.

有時我跟自己說話， 只是因為我能，

In myself, I had a ready audience,

在我自己內部早有個現成的聽眾，

and I believed that by expressing my thoughts and wishes,

我相信透過表達我的想法和心願，

others would listen, too.

其他人也會聽見。

But as I began to communicate more,

不過當我開始表達更多，

I realized that it was in fact only just the beginning

我發現這只是為自己

of creating a new voice for myself.

創造一個新聲音的開始。

I was thrust into a world I didn't quite know how to function in.

我被猛推進了一個 我不確定該如何運作的世界，

I stopped going to the care home

我不再去安養所，

and managed to get my first job making photocopies.

有了我的第一份工作 － 影印，

As simple as this may sound, it was amazing.

或許聽起來很簡單， 但實在太棒了。

My new world was really exciting

我的新世界如此刺激，

but often quite overwhelming and frightening.

但也很恐怖，有時難以承受。

I was like a man-child,

我像個大人模樣的小孩，

and as liberating as it often was,

在獲得解脫的同時

I struggled.

我也在掙扎努力。

I also learned that many of those who had known me for a long time

我也發現許多認識我有段時間的人，

found it impossible to abandon the idea of Martin they had in their heads.

根本無法他們腦海裡對馬丁的概念。

While those I had only just met

而那些初次遇見的人

struggled to look past the image of a silent man in a wheelchair.

也很難跨越我在輪椅上沈默的男子的形象。

I realized that some people would only listen to me

我明白到有些人只有在我所言之物

if what I said was in line with what they expected.

符合他們的預期時才會聽著我說。

Otherwise, it was disregarded

不然那些話只會被當成耳邊風，

and they did what they felt was best.

仍然依照他們認為適當的方式去做。

I discovered that true communication

我發現真正的溝通，

is about more than merely physically conveying a message.

不只是傳達字面訊息，

It is about getting the message heard and respected.

更是讓其中的意義被聽見，被尊重。

Still, things were going well.

就算如此，一切都發展的很好。

My body was slowly getting stronger.

我的身體慢慢地變得強壯。

I had a job in computing that I loved,

我做著喜歡的電腦運算的工作，

and had even got Kojak, the dog I had been dreaming about for years.

甚至還有了我多年來 夢寐以求的小狗 － 「寇賈」。

However, I longed to share my life with someone.

然而我渴求和某人分享我的生活。

I remember staring out the window as my dad drove me home from work,

我記得在父親載我下班回家時， 我凝望窗外，

thinking I have so much love inside of me and nobody to give it to.

想著在我內心裡有著如此之多的愛， 卻沒有給予的對象，

Just as I had resigned myself to being single for the rest of my life,

正當我認命我將形單影隻度過餘生時，

I met Joan.

我遇見了瓊恩。

Not only is she the best thing that has ever happened to me,

她不但是我生命中最美好的事，

but Joan helped me to challenge my own misconceptions about myself.

瓊恩更幫助我重新思考我對自己的誤解。

Joan said it was through my words that she fell in love with me.

瓊恩，她是透過我的文字愛上我的。

However, after all I had been through,

然而，在我歷經這一切之後，

I still couldn't shake the belief

我無法相信

that nobody could truly see beyond my disability

有人能忽略我的殘疾，

and accept me for who I am.

真正地看見我、接納我。

I also really struggled to comprehend that I was a man.

我很難接受，我是個男人的事實。

The first time someone referred to me as a man,

第一次有人這樣稱呼我，

it stopped me in my tracks.

我停下手邊的事，

I felt like looking around and asking, "Who, me?"

感覺就像在四下張望， 並詢問：「誰？我嗎？」

That all changed with Joan.

一切都因為瓊恩改變了。

We have an amazing connection

我們不但心靈相通，

and I learned how important it is to communicate openly and honestly.

而且我領會到開放、 誠實地溝通有多麼重要，

I felt safe, and it gave me the confidence to truly say what I thought.

我覺得安全， 安全感讓我能自信誠實地說出想法。

I started to feel whole again, a man worthy of love.

我再次感覺完整， 一個值得被愛的男人。

I began to reshape my destiny.

我開始重新塑造我的命運，

I spoke up a little more at work.

在工作上表達更多想法。

I asserted my need for independence to the people around me.

我對周遭的人堅定說出 我對獨立自強的需求，

Being given a means of communication changed everything.

一旦有了溝通的意義，一切都改變了。

I used the power of words and will to challenge the preconceptions

我運用文字的力量和意志來質疑

of those around me and those I had of myself.

那些在我週遭的人 以及我對自己的成見。

Communication is what makes us human,

溝通讓我們成為一個人，

enabling us to connect on the deepest level

讓我們能與身邊的人

with those around us --

深入對談，相互理解 －

telling our own stories,

訴說我們的故事，

expressing wants, needs and desires,

表達欲望、需求和渴求；

or hearing those of others by really listening.

或是真心聆聽別人的故事、 欲望、需求和渴求，

All this is how the world knows who we are.

這就是世界認識我們的方法。

So who are we without it?

要是不能溝通我們又是誰呢?

True communication increases understanding

真正的溝通增進理解，

and creates a more caring and compassionate world.

創造一個更溫暖，更有同理心的世界。

Once, I was perceived to be an inanimate object,

曾經，我被當作一件沒有生命的物體，

a mindless phantom of a boy in a wheelchair.

一個沒有靈魂的鬼影， 附身於輪椅上的小男孩。

Today, I am so much more.

今天，我改頭換面，

A husband, a son, a friend,

我是一位丈夫、兒子、朋友、

a brother, a business owner, a first-class honors graduate,

兄弟、企業家、一級榮譽學位畢業生、

a keen amateur photographer.

熱情的業餘攝影師。

It is my ability to communicate that has given me all this.

我的溝通能力讓我獲得這些。

We are told that actions speak louder than words.

我們常聽人講「說的比做的容易」，

But I wonder,

但我懷疑，

do they?

是這樣嗎？

Our words, however we communicate them,

我們的文字， 無論我們用什摩方法來溝通，

are just as powerful.

都是飽含力量的。

Whether we speak the words with our own voices,

不論我們是用自己的聲音說，

type them with our eyes,

還是用眼睛打字，

or communicate them non-verbally to someone who speaks them for us,

又或是用言語以外的方法， 讓他人幫助我們說，

words are among our most powerful tools.

文字是我們最有力的工具之一。

I have come to you through a terrible darkness,

我來到你的面前， 穿越恐怖的黑暗，

被關愛我的靈魂和語言本身，

pulled from it by caring souls

從黑暗中被拉了出來。

and by language itself.

僅僅只是你的聆聽， 讓我離光明更近，

The act of you listening to me today brings me farther into the light.

我們在這裡，一起發光。

We are shining here together.

在我溝通的方式裡最困難的是，

If there is one most difficult obstacle to my way of communicating,

有時我想要大叫，

it is that sometimes I want to shout

有時我只是想要輕聲表達愛與感恩，

and other times simply to whisper a word of love or gratitude.

卻只能發出同樣的一種聲音。

It all sounds the same.

但如果你能，

But if you will,

請以最溫暖溫柔的方式， 想像以下的兩個字：

please imagine these next two words as warmly as you can:

謝謝。

Thank you.

（掌聲）

(Applause)